I had a kidney transplant at the worst time in my life. At age 29 my polycystic kidneys had failed. My mother had passed away the previous year. I was separated from my husband with two children. My daughter was spending her first summer away from me with her father, I was on the verge of being evicted from my apartment and my sister who was my donor was starting the third year of her degree program for Criminal Justice. She said she walked the halls of the university crying and trying to figure out how she was going to get through the program that she had already paid for and give me a life-saving kidney. I just now realized while writing this what an impossible situation we both were in at the time. She was also a single mother with two children who would need care while she was in the hospital.
Our large family of nine children jumped into action; and, with the university officials at my sister’s school we somehow made it to the hospital at the appointed time ready for our surgeries. Everything went so well. We still talk and laugh about how I was able to get up and walk down to her room after the surgery before she was fully awake. I was even pushing her in a wheelchair after I practically forced her out of the hospital bed. We left the hospital around the same time but soon after I had to come back.
everyone was together in one place except me. I was at the hospital close to where we lived struggling to keep the kidney that my sister had given me.
The first time I came back it was only for a few weeks then each time I had to go back due to rejection it was for longer and longer periods of time. By this time, I had managed to get my family back together. My husband and I reconciled during one of my hospital stays after the transplant. I found an apartment and got my daughter from her father’s house and my younger son, from my sister’s house. He had jumped from staying with my brother’s to best friend and then to a sister’s house. Finally, everyone was together in one place except me. I was at the hospital close to where we lived struggling to keep the kidney that my sister had given me. This gift which everyone prayed would save my life and ease my burdens seemed to be making it increasingly more difficult.
When my father visited from North Carolina he pitched in and watched the children during the day until my husband got off of third shift at work. Instead of visiting, he was cooking, cleaning and babysitting my children. He even made an arrangement with a neighbor to braid my daughter’s hair when it got kind of wild looking.
As I lay in the bed or on the couch they would run outside and play and bring me flowers and rocks that they thought I would like. I would press the flowers in my journal and kept the rocks in a jar by my bed.
Through all the hospital visits and home visits from the hospital my children, who were now 6 and 11; stayed stronger than I would have expected children to be. There was no crying or acting out just questions. Why did I still have an IV in my arm? Am I staying home this time? We never knew what answers to give them. As I lay in the bed or on the couch they would run outside and play and bring me flowers and rocks that they thought I would like. I would press the flowers in my journal and kept the rocks in a jar by my bed. Sometimes they would try to stay inside with me and for a while I would let them but soon I would get sleepy and have to tell them it was their time to play and my time to sleep. They relied on my husband to let them know when I was awake so they could come back in and talk to me. They enjoyed keeping me updated on what was going on in the neighborhood.
For a whole year the perfectly matched kidney was rejecting and no one knew why. Finally, it was discovered that the kidney had a toxicity to cyclosporine my primary anti-rejection medication. By the time they found this out the poor kidney had suffered damage. They tried to save it by putting me on higher doses of the other two immunosuppressant’s but the kidney was too far gone and mentally so was I. I refused to go back to the hospital for another round of their high-powered anti-rejection medications where I was put in a “quiet-room” and everyone had to wear special gear to come in to see me. I decided to stop fighting for this kidney’s survival and go on peritoneal dialysis.
There you would think would be the end of my story because that in itself was a difficult decision to make. It really wasn’t because I knew my body very well and I also knew my sister’s kidney had given me everything that it had to give.
When my children came home from school I was up and off the couch ready to hear their adventures of the day. We would go outside together for talks and walks. They often joined me in the kitchen to watch me cook our healthy home- cooked meals.
My story goes on with peritoneal dialysis and being a stay at home mom for my two children who had been through quite enough with the medical world of the Emergency Room and weekly doctor visits the IV’s, hospital children’s play rooms and family dinners in the hospital cafeteria. They had had enough of family coming over to care for them and knowing that mom would not be there to braid their hair or patch a scar on their knee. They had had enough of worrying if I would ever get out of the bed or off the couch.
It was time for my whole family to have a time-out to be normal. Everyone had sacrificed a year and a half of their lives for me to get the kidney transplant and now it was time for me to readjust the family dynamics. I decided to not try for another kidney transplant until my children were older and able to handle it. I stayed home and completed my peritoneal treatments privately. I took great care of myself to prevent any unexpected hospital visits by joining exercise classes at the community YMCA to keep my energy levels up. While they were in high school I also took college classes and obtained my degree. When my children came home from school I was up and off the couch ready to hear their adventures of the day. We would go outside together for talks and walks. They often joined me in the kitchen to watch me cook our healthy home-cooked meals.
As the bruises from my IV’s and surgery scar healed, so did my children. There was no longer worry or fear in their eyes about what was going to happen to me. And, for the next 9 years of grade school and high school they knew I would be there waiting for them when they came home with flowers and rocks.
I eventually received the second transplant and I was glad that I had waited. It was tougher than the first transplant. I am not disparaging kidney transplants in any way. In fact, my son just received his first and hopefully last kidney transplant after 5 years of dialysis. Right now I’m 24 years strong on dialysis and I have stabilized my health and life with health coaching and yoga. I am satisfied with the quality of my life for now until the next time I feel an adventure coming on and maybe I will try for a transplant again. They say that the 3rd time’s a charm!
About Bernadette: I am 56 years-old and I have been on dialysis for 24 years. Besides the 2 transplants mentioned in the essay I have had peritoneal dialysis and a double nephrectomy of my 2 enlarged polycystic kidneys. I’ve had more kidneys taken out than put in! I am a Certified Health Coach and ESRD consultant for those faced with making the difficult choices involved with kidney failure. I sew and am opening my own business named Raintree Nutrition Works! teaches natural ways to address current health issues. For balance in my life I practice meditation and yoga.
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